A new survey finds that new parents are not well informed about the risk of premature births.

Miracle Babies Foundation, the nonprofit organization founded to support Neonatal Intensive Care Unit (NICU) families, along with Sera Prognostics, a women’s healthcare company, recently released the results of its recent survey titled ‘Premature Risk Education to Empower Moms-to-be with Information Early’ (PREEMIE), conducted in the U.S. among 140 (118 mothers and 22 fathers of premature babies) participants.

From the findings, the researchers found that  while parents are not as informed as they should be, they do want to be empowered with information about the possibility and risks associated with delivering a premature baby to better prepare and educate themselves if it were to happen to them.

Amost 1 in 10 babies is born premature in the U.S.—one of the highest rates in the world, according to the Centers for Disease Control and Prevention.

The tough part is that it can be hard to tell if you’ll have a premie because there are really no pre-existing standard.

Up to 50% of these premature babies are born to mothers with no obvious risk factors and sadly, premature babies face immediate and long-term health challenges, including cerebral palsy, learning disabilities, and other chronic conditions.

Per a press release about the survey, the majority of survey respondents said that they wish they had known more about the risks so that they could have researched both premature birth and interventions, and discussed it with their doctors.

Meanwhile, other responsdents said  they would have wanted to be able to have better prepared family and friends, and forewarned employers about possible missed work resulting from increased office visits and therapies that premature babies often require

“As physicians, we never want to alarm patients, specifically if we can’t guarantee we can change outcomes – as is the case with informing patients about increased risk of preterm birth. The survey findings demonstrate that expecting parents want to arm themselves with as much information as possible. In preparation of preterm delivery, parents want to prepare themselves for the many dynamics that can accompany a premature delivery: financial planning, logistical details and research on lifestyle changes or behavior modification that may prolong pregnancy,” said Sean Daneshmand MD, and Founder of Miracle Babies. “Moreover, it is important to be proactive and speak to your doctor, who may suggest interventions that have the potential to help improve outcomes and give your baby the best possible start in life.”

Key Survey Findings

• 95% of respondents said they would have wanted to know if their baby was at an increased risk of being born prematurely
• Of the 95% who would have wanted to know, 97% still would have wanted to know, even if their doctor couldn’t change the outcome
• 79% of respondents didn’t know that women without risk factors account for up to 50% of preterm births
• 77% of respondents didn’t know that premature birth is the #1 cause of infant death and illness
• More than half (53%) of participants did not discuss preterm birth with their healthcare provider
• Two-thirds (68%) did not know they were at risk until they went into premature labor

“My son Elijah was born after only 30 weeks and spent 91 days in the NICU; I felt so alone and unprepared,” survey participant Lucy Loomis said. “No one in my immediate circle of family or friends had experienced a preterm birth – I didn’t know who to turn to for advice. It would have been great to have known during my pregnancy that I was at risk for a preterm delivery. The information would have been useful to prepare for my pregnancy and delivery journey, including the possibility of being on bedrest for a long period of time, or that my baby might need to be intubated. It would have alleviated some of the fear, trauma and anxiety that I went through.”

Knowing some of the factors associated with delivering prematurely, including previous preterm birth, prior miscarriage, IVF, family history and health and lifestyle factors are important to discuss during an office visit. For those who don’t have symptoms, there is a blood test that can help determine an individual’s personal risk for preterm birth. Early prediction may allow parents and healthcare providers to modify individualized treatment during pregnancy and better plan for post-delivery care for preterm babies.

For more information to help determine the risks of premature birth and how you can help raise awareness, please visit https://www.miraclebabies.org/.

For more information about Sera Prognostics and its test to predict preterm birth risk, please visit http://www.pretrm.com/.